A Short Story

Slow growth syndrome, oxandrolone and the pathologization of my height

I am a science writer, the Assistant Editor of ScienceBasedMedicine.org, and a former Registered Massage Therapist with a decade of experience treating tough pain cases. I’ve written hundreds of articles and several books, and I’m known for sassy, skeptical, referenced analysis and a huge bibliography. I am a runner and ultimate player, and live in beautiful Vancouver, Canada. • full bio • about PainScience.com

CBC Radio One purchased this essay for the First Person Singular feature on their national show, “This Morning” in June, 2002. The text version has been slightly edited, and an important appendix was added in March, 2005.

Cycling up Vancouver’s Oak Street on a sunny morning, I came upon a familiar building, a place I had not seen in about fifteen years, and the sight of it paralyzed me with anxiety, like a traumatic flashback — except it was the real thing, the actual place, right there before my eyes. I had to stop the bicycle to breathe and let my head swim. The building was the Vancouver Children’s Hospital.

A silent, anonymous place

I was still a child the last time I’d seen it. The hospital was an anonymous place my parents had taken me to, somewhere in the big city, far from home. I didn’t know where I was at the time, but when I saw it again as an adult, there was a match with something stored in my skull: the outline of the building like a stack of building blocks, the primary colours, the silence that seems out of place around a place built for children.

Medical science failed me in that hospital. I was diagnosed early with “slow growth syndrome,” and this was the first mistake that science made with me: giving it a name. Slow growth syndrome is no syndrome at all. Some people grow slowly. So what? I was small for my age. I didn’t have a pathology: I had a velocity. I was taking my time.

Nevertheless, the doctor wanted to keep an eye on me, so my parents dutifully took me back every two years to be measured and the pace of my growth evaluated for more distressing signs of oddity. I felt fine, of course: I was a healthy young man.

Then the trauma began

Then came the tests, and the trauma began. I had been labelled with a problem, and I was treated like a problem. Science needs data: the doctor wanted to know something about my blood, something unusual. The test took hours. I remember the painful, short, thick needle that they called a “butterfly needle.” I remember being desperately sleepy, but they would not let me sleep: a nurse would slap my cheeks, and I would strain to stay awake, afraid for my life. I emerged from it as confused and violated as a UFO abductee, dreaming of bright lights and probes.

At age twelve, the doctor gravely declared that my skeleton was “five years behind” my chronological age. Would I reach a normal height? Certainly — just later than most people. Was there any medical risk? No, not really — but he was concerned that I might get teased in high school. He proposed a miraculous solution: a new drug, an anabolic steroid, still illegal in Canada.

The doctor’s authority was overwhelming. My family had no knowledge with which to protest. He told us it was a risk-free triumph of modern medicine, and we had no reason not to believe him. But the process of science was about to fail me again, because this was an unjustified experiment.

Skinny little kid …football player …skinny little kid

The drug worked miracles, all right. I grew fast for a while. I didn’t just grow, I thickened. If you line up my school pictures, the effect is striking: skinny little kid, skinny little kid, football player, and then back to skinny little kid by the ninth grade. For one year, I was stocky. And while I was taking the drug, I felt great. But soon after I stopped, my health vanished like I’d fallen through a trap door.

I got something like the flu and I simply never got better. Soon I was out of school, too sick to do much of anything, and I stayed that way for about eight years, my endocrine system limping along, its delicate homeostasis disrupted by a drug intended to spare me from locker room teasing.

Which it didn’t, by the way.

Incredibly, neither my parents nor I made the connection between the drug and the illness. How could the drug be making me sick if I wasn’t taking it anymore? We were that naive about physiology. So we started to search for the answers, and medical science failed me once more: there wasn’t a doctor in the land who could diagnosis pituitary dysfunction or deduce the cause of my trouble. Instead, I was sent to psychiatrists. By age sixteen, I was cynical and desperate.

A “world authority”

Eventually, my parents returned me to the Vancouver children’s hospital. We begged the original doctor — the villain of my story and by this time a “world authority” in his field — to try to solve the mystery of my illness. A team of elite doctors was assembled to examine me: the heads of four departments all contemplated my case. Endocrinology, neurology, cardiology, and — of course — psychiatry! Their diagnosis? They had none. Their recommendation? The man who gave me the steroids in the first place, probably very much afraid of litigation, told us to “go home and think positively.”

The failure of medical science was now complete. I never again sought the assistance of the medical system for my condition. After another three years of hell and soul-searching, I finally found answers and solutions somewhere else entirely.

Today, I am not just healthy but athletic, and only suffer from the old symptoms once in a blue moon and not as badly. The doctor who played god with my childhood is dead and beyond the reach of a lawsuit. As a footnote, the drug that he gave me may have deprived me of my full height. At 5'3" tall, 99% of Caucasian men are taller than I am. The final irony of my story is that the doctor would probably still think that my height is a problem. He’d be wrong about that. I have an interesting perspective on the world that I wouldn’t trade for anything.

Appendix: Update (March, 2005)

The drug I was given was called Anavar at the time. It is now better known by its generic name, oxandrolone. I no longer suspect that oxandrolone was the cause of the mysterious symptoms that I suffered for years after taking it (and still cope with occasionally to this day). Acknowledging this re-arranges a central story in my life, hurts my pride, and compromises the point I once tried to make in this article, but it is unavoidable.

I’ve come to this conclusion in the aftermath of some more medical testing. About twenty-eight years after I was first subjected to provocative insulin tests as a five-year-old at Vancouver Children’s Hospital, I recently endured the same procedure at St. Paul’s Hospital in downtown Vancouver, under the care of a much different endocrinologist: a young woman, younger than myself, humble and curious and supportive. She encouraged me to do the testing to put questions about my endocrine health to rest once and for all.

Although it was certainly unpleasant, the testing was not as traumatic as it was when I was a child. Once again, I was given a scary dosage of insulin, causing my blood sugar to fall lower than you really ever want your blood sugar to be, and a nurse checked in with me at regular intervals to ensure that I didn’t lose consciousness. If nothing else, the test established that I am certainly no stranger to severe fatigue, which was validating: an objectively pathological state felt more or less familiar to me!

My doctor today assures me that they “would never do that to a child today” — it’s simply too intense a procedure, and would only be considered necessary in cases with much clearer indications of pathology than I had in 1976. When I was five, there was not a single thing wrong with me except that I was small for my age.

So what happened?

The acquittal of my endocrine system and oxandrolone

Not only were my recent test results normal, in some cases they indicated a particularly strong endocrine system: my blood sugar rebounded well, and my body busily started pumping out all the hormones that it should in that situation. My adrenals did their job, my pituitary did its job, and so on — there was not one sour note in the hormone symphony that day.

If oxandrolone ever damaged my endocrine system, I have long since healed. But it probably did not. My new endocrinologist believes that it’s implausible that oxandrolone would have ever had any significant side effects from such a small dosage, let alone lasting ones, nor even anything like the symptoms I suffered from. For various reasons, I trust her judgement on this. Nor, apparently, is there any reasonable possibility that oxandrolone could have affected my final height — the only way that could have happened was if it had actually stopped my growth (premature epiphyseal plate closure) at the time I was taking it, which it didn’t.

As dubious a prescription as it was, oxandrolone probably had no effect on me whatsoever except to make me grow like a weed for a little while.

Without a medical scapegoat, where does that leave me?

My cautionary tale is weakened but still relevant

It’s still clear that I was unnecessarily pathologized and frightened at Vancouver Children’s Hospital. Examining my records, my new endocrinologist scoffed at the idea that I had “slow growth syndrome.” My endocrine system was just as healthy then as it is now, which is completely new information to me — I’ve spent me entire life assuming that I had
some kind of endocrine dysfunction when I was young.

Perhaps most telling of all is that my medical file from VCH plainly stated that my “bone age” was only 3.5 years behind my chronological age — with a two year margin of error. The family memory is that we were authoritatively informed that my bone age was five years behind my chronological age, with no margin of error ever discussed, and this oppressive “fact” was the entire basis of my diagnosis as having “slow-growth syndrome” (words that never actually appeared in my file). Yet apparently there is no way of more accurately determining the “bone age” of anyone. The method is to simply eye-ball a patient’s x-rays in contrast with a set of x-rays of average children at various ages — an incredibly subjective judgement call!

So it would seem that the sole diagnostic criteria for labelling me with “slow growth syndrome” was that I was pretty short, and the result was a couple decades of assorted doubts, anxieties, and medical red herrings. Irritating as that is,
the oxandrolone was probably harmless, which takes the wind out of my insinuations of malpractice. I was pathologized and misled, but not otherwise harmed.

The mystery remains

And so the mystery of my poor adolescent health remains, nor am I any closer to understanding why I still suffer from occasional episodes of severe fatigue to this day. What can a person do with medical mystery? All that remains to me is philosophy (see Why Do We Get Sick?) and wild speculation: is it possible that the body can malfunction in ways that modern medical science has yet to label?

It is likely that there are biological malfunctions both subtle and erratic, and much harder to identify and cure than the obvious ones.

Certainly it is. Endocrinology, for instance, is still a rudimentary science: clinicians are trained only to recognize and treat the most blatant hormonal deficiencies and excesses, the “big game” or “low-hanging fruit” of endocrine pathology. There is no reason to suppose that endocrine dysfunction stops there, not while scientists are still discovering new messenger molecules, and cannot answer questions as basic as why the pancreas sometimes fails to produce enough insulin, or how to prevent that from happening.

It is likely that there are biological malfunctions both subtle and erratic, and much harder to identify and cure than the obvious ones, which are tricky enough. We have all had the experience of a passing symptom, something clearly not working as it should, like a car engine stuttering one day and then resuming as though nothing was ever wrong. What can a doctor or a mechanic say about such things? Nothing, of course, unless it recurs — and not necessarily then either.

There can be no doubt that things do go wrong. And identifying them and treating them will be a challenge something like finding a precious curative protein in the saliva of a rare nocturnal rain forest spider that it produces only once every three years … and only while it’s mating.

Meanwhile, I am forced to accept and embrace my fate and my identity: occasional bouts of debilitating fatigue are just my lot in life. It was much more straightforward to blame oxandrolone, though. I’ll miss the simplicity of that!